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The objective was to investigate the relationship between early global cognitive functioning using the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) and cognitive flexibility (Trail Making Test (TMT), TMT B-A), with long-term outcome assessed by the Mayo-Portland Adaptability Index (MPAI-4) in severe traumatic brain injury (sTBI) controlling for the influence of cognitive reserve, age, and injury severity. Of 114 patients aged 18–65 with acute Glasgow Coma Scale 3–8, 41 patients were able to complete (BNIS) at 3 months after injury and MPAI-4 5–8 years after injury. Of these, 33 patients also completed TMT at 3 months. Global cognition and cognitive flexibility correlated significantly with long-term outcome measured with MPAI-4 total score (rBNIS = 0.315; rTMT = 0.355). Global cognition correlated significantly with the participation subscale (r = 0.388), while cognitive flexibility correlated with the adjustment (r = 0.364) and ability (r = 0.364) subscales. Adjusting for cognitive reserve and acute injury severity did not alter these relationships. The effect size for education on BNIS and TMT scores was large (d ≈ 0.85). Early screenings with BNIS and TMT are related to long-term outcome after sTBI and seem to measure complementary aspects of outcome. As early as 3 months after sTBI, educational level influences the scores on neuropsychological screening instruments.

Purpose: To explore the experiences of being a family with one member suffering from severe traumatic brain injury (STBI) up to 7 years earlier through narrative family interviews.

Methods: There are few studies where a family as a unit, including persons with STBI, are interviewed together. This study used a family systems research approach following a qualitative interpretative design. Therefore, 21 families with a total of 47 family members were interviewed. Qualitative content analysis was used to reveal categories with sub-categories and a theme.

Results: "From surviving STBI towards stability, through the unknown, into a new everyday life and a new future as a family" characterized the implicit message. The results revealed two categories both with three subcategories. The first category characterized the rapid change from a normal everyday life to one of uncertainty and finally to one of stability, and the second category described how it is to adapt as a family after STBI.

Conclusions: Long-term experiences of STBI show the importance for the whole family of belonging to a context, having a job, and having something to belong to as a way to achieve stability. Families' feelings of loneliness and lack of treatment and support are challenges for professionals when trying to involve families in care and rehabilitation.

IMPLICATIONS FOR REHABILITATIONA

• sense of belonging, having a purpose and a social network are important within families.
• Professionals can provide information and can help to eliminate misunderstandings for individuals with severe traumatic brain injury and their families.
• It is important for rehabilitation professionals to undertake a thorough family assessment.
• This assessment will support families become involved in the process of rehabilitation.

Purpose: To explore the health and well-being of persons seven years after severe traumatic brain injury (STBI).

Material and methods: Follow-up of 21 persons 1 and 7 years after STBI using surveys for functional outcome, anxiety/depression, health and mental fatigue. Interviews were conducted and analysed using qualitative content analysis. Convergent parallel mixed method then merged and analysed the results into an overall interpretation.

Results: Good recovery, high functional outcome and overall good health were relatively unchanged between 1 and 7 years. Well-being was a result of adaptation to a recovered or changed life situation. Persons with good recovery had moved on in life. Persons with moderate disability self-estimated their health as good recovery but reported poorer well-being. For persons with severe disability, adaptation was an ongoing process and health and well-being were low. Only a few persons reported anxiety and depression. They had poorer health but nevertheless reported well-being. Persons with moderate and severe mental fatigue had low functional outcomes and overall health and none of them reported well-being.

Conclusions: The life of a person who has suffered STBI is still affected to a lesser or greater degree several years after injury due to acceptance of a recovered or changed life situation. Further studies are needed on how health and well-being can be improved after STBI in the long-term perspective.

Aim. To assess the clinical course of disability, cognitive, and emotional impairments in patients with severe TBI (s-TBI) from 3 months to up to 7 years post trauma. Methods. A prospective cohort study of s-TBI in northern Sweden was conducted. Patients aged 18-65 years with acute Glasgow Coma Scale 3-8 were assessed with the Glasgow Outcome Scale Extended (GOSE), the Hospital Anxiety and Depression Scale (HADS), and the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) at 3 months, 1 year, and 7 years after the injury. Results. The scores on both GOSE and BNIS improved significantly from 3 months (GOSE mean: 4.4 +/- 2.3, BNIS mean: 31.5 +/- 7.0) to 1 year (GOSE mean: 5.5 +/- 2.7, p=0.003, BNIS mean: 33.2 +/- 6.3, p=0.04), but no significant improvement was found from 1 year to 7 years (GOSE mean: 4.7 +/- 2.8, p=0.13, BNIS mean: 33.5 +/- 3.9, p=0.424) after the injury. The BNIS subscale "speech/language" at 1 year was significantly associated with favourable outcomes on the GOSE at 7 years (OR=2.115, CI: 1.004-4.456, p=0.049). Conclusions. These findings indicate that disability and cognition seem to improve over time after s-TBI and appear to be relatively stable from 1 year to 7 years. Since cognitive function on some of the BNIS subscales was associated with outcome on the GOSE, these results indicate that both screening and follow-up of cognitive function could be of importance for the rehabilitation of persons with s-TBI.

OBJECTIVE: To investigate the occurrence of behavioural problems in patients with severe traumatic brain injury during the first year after injury and potential associations with outcome. An additional post hoc objective was to analyse the frequency of behaviours with need for intervention from staff.

DESIGN AND SETTING: In a prospective population based cohort study 114 patients with severe traumatic brain injury were assessed at three weeks, three months and one year after injury.

MAIN MEASURES: Assessments included clinical examination and standardised instruments. Agitation was assessed with the Agitated Behaviour Scale, the course of recovery by the Rancho Los Amigo Scale and outcome by Glasgow Outcome Scale Extended.

RESULTS: Agitation were most common at 3 weeks post injury and 28% (n=68) of the patients showed at least one agitated behaviour requiring intervention from staff. Presence of significant agitation at 3 weeks after injury was not associated with poor outcome. At 3 months agitation was present in 11% (n=90) and apathy in 26 out of 81 assessed patients. At 3 months agitation and apathy were associated with poor outcome at one year.

CONCLUSIONS: Most agitated behaviours in the early phase are transient and are not associated with poor outcome. Agitation and apathy are uncommon at three months but when present are associated with poor outcome at one year after injury. In the early phase after a severe traumatic brain injury agitated behaviour in need of interventions from staff occur in a substantial proportion of patients.

OBJECTIVE: To study: (i) acute computed tomography (CT) characteristics and clinical outcome; (ii) clinical course and (iii) Corticosteroid Randomisation after Significant Head Injury acute calculator protocol (CRASH) model and clinical outcome in patients with severe traumatic brain injury (sTBI).

METHODS: Initial CT (CTi) and CT 24 hours post-trauma (CT24) were evaluated according to Marshall and Rotterdam classifications. Rancho Los Amigos Cognitive Scale-Revised (RLAS-R) and Glasgow Outcome Scale Extended (GOSE) were assessed at three months and one year post-trauma. The prognostic value of the CRASH model was evaluated.

RESULTS: Thirty-seven patients were included. Marshall CTi and CT24 were significantly correlated with RLAS-R at three months. Rotterdam CT24 was significantly correlated with GOSE at three months. RLAS-R and the GOSE improved significantly from three months to one year. CRASH predicted unfavourable outcome at six months for 81% of patients with bad outcome and for 85% of patients with favourable outcome according to GOSE at one year.

CONCLUSION: Neither CT nor CRASH yielded clinically useful predictions of outcome at one year post-injury. The study showed encouragingly many instances of significant recovery in this population of sTBI. The combination of lack of reliable prognostic indicators and favourable outcomes supports the case for intensive acute management and rehabilitation as the default protocol in the cases of sTBI.

Traumatic brain injury (TBI) constitutes a major health problem and is a leading cause of long-term disability and death. Patients with severe traumatic brain injury, S-TBI, comprise a heterogeneous group with varying complexity and prognosis. The primary aim of this thesis was to increase knowledge about clinical course and outcome with regard to prognostic factors. Papers I, II and III were based on data from a prospective multicentre observational study from six neurotrauma centers (NCs) in Sweden and Iceland of patients (n=103-114), 18-65 years with S-TBI requiring neurosurgical intensive care or collaborative care with a neurosurgeon (the “PROBRAIN” study).  Paper IV and V were performed on a regional subset (n=37).

In Paper I, patients with posttraumatic disorders of consciousness (DOC) were assessed as regards relationship between conscious state at 3 weeks and outcomes at 1 year. The number of patients who emerged from minimally conscious state (EMCS) 1 year after injury according to status at 3 weeks were: coma (0/6), unresponsive wakeful syndrome (UWS) (9/17), minimally conscious state (MCS) (13/13), anaesthetized (9/11). Outcome at 1 year was good (Glasgow Outcome Scale Extended (GOSE>4) in half of the patients in MCS (or anaesthetized) at 3 weeks, but not for any of the patients in coma or UWS.  

 In Paper II, the relationships between clinical care descriptors and outcome at 1 year were assessed. A longer length of stay in intensive care, and longer time between discharge from intensive care and admission to inpatient rehabilitation, were both associated with a worse outcome on the GOSE. The number of intervening care units between intensive care and rehabilitation, was not significantly associated with outcome at 1 year.

 In Paper III, the clinical course of cognitive and emotional impairments as reflected in the Barrow Neurological Institute Screen for Higher Cerebral Functions (BNIS) and the Hospital Anxiety and Depression Scale (HADS) were assessed from 3 weeks to 1 year together with associations with outcomes GOSE and Rancho Los Amigos Cognitive Scale-Revised (RLAS-R) at 1 year. Cognition improved over time and appeared to be stable from 3 months to 1 year.

 In Paper IV, clinical parameters, the clinical pathways from injury to 3 months after discharge from the NC in relation to outcomes 3 months post-injury. Ratings on the RLAS-R improved significantly over time. Eight patients had both “superior cognitive functioning” on the RLAS-R and “favourable outcome” on the GOSE. Acute transfers to the one regional NC was direct and swift, transfers for postacute rehabilitation scattered patients to many hospitals/hospital departments, not seldom by several transitional stages.

 In Paper V, an initial computerized tomography of the brain (CT_i) and a further posttraumatic brain CT after 24 hours (CT₂₄) were evaluated according to protocols for standardized assessment, the Marshall and Rotterdam classifications. The CT scores only correlated with clinical outcome measures (GOSE and RLAS-R) at 3 months, but failed to yield prognostic information regarding outcome at 1 year. A prognostic model was also implemented, based on acute data (CRASH model). This model predicted unfavourable outcomes for 81% of patients with bad outcome and for 85% of patients with favourable outcome according to GOSE at 1 year. When assessing outcomes per se, both GOSE and RLAS-R improved significantly from 3 months to 1 year.

 The papers in this study point both to the generally favourable outcomes that result from active and aggressive management of S-TBI, while also underscore our current lack of reliable instruments for outcome prediction. In the absence of an ability to select patients based on prognostication, the overall favourable prognosis lends support for providing active rehabilitation to all patients with S-TBI. The results of these studies should be considered in conjunction with the prognosis of long-term outcomes and the planning of rehabilitation and care pathways. The results demonstrate the importance of a combination of active, acute neurotrauma care and intensive specialized neurorehabilitation with follow-up for these severely injured patients.

Objective: To assess associations between real-world care pathways for working-age patients in the first year after severe traumatic brain injury and outcomes at 1 year.

Setting and Design: Prospective, observational study with recruitment from 6 neurosurgical centers in Sweden and Iceland. Follow-up to 1 year, independently of care pathways, by rehabilitation physicians and paramedical professionals.

Participants: Patients with severe traumatic brain injury, lowest (nonsedated) Glasgow Coma Scale score 3 to 8 during the first 24 hours and requiring neurosurgical intensive care, age 18 to 65 years, and alive 3 weeks after injury.

Main Measures: Length of stay in intensive care, time between intensive care discharge and rehabilitation admission, outcome at 1 year (Glasgow Outcome Scale Extended score), acute markers of injury severity, preexisting medical conditions, and post-acute complications. Logistic regression analyses were performed.

Results: A multivariate model found variables significantly associated with outcome (odds ratio for good outcome [confidence interval], P value) to be as follows: length of stay in intensive care (0.92 [0.87-0.98], 0.014), time between intensive care discharge and admission to inpatient rehabilitation (0.97 [0.94-0.99], 0.017), and post-acute complications (0.058 [0.006-0.60], 0.017).

Conclusions: Delays in rehabilitation admission were negatively associated with outcome. Measures to ensure timely rehabilitation admission may improve outcome. Further research is needed to evaluate possible causation.